Bill S-201, An Act to prohibit and prevent genetic discrimination was introduced (as a private member's bill) in the Senate by Sen. James Cowan on December 9, 2015 in the 41st Parliament, 2nd Session. It was passed by the Senate on April 14, 2016 and it is now before the House of Commons in its second reading (the Bill passed first reading on May 3, 2016).
The following is an overview of the proposed law, including possible future implications.
About Bill S-201
If it becomes law, Bill S-201 would prohibit any person from requiring an individual to take a genetic test or disclose the results of a genetic test as a condition of:
- providing goods or services,
- entering into or continuing a contract, or
- offering specific conditions in a contract with, that individual.
The proposed law includes criminal sanctions, including imprisonment and maximum fines of $300,000 and $1 million, depending on the severity of the offence.
The Bill (if it becomes law) sets out specific exceptions for medical personnel, such a doctors in respect of someone under their care and it has a specific exception for someone participating in medical or scientific research.
It would also amend the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, and provides employees with other protections related to genetic testing and test results.
It would also amend the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics .
Reasons and Support for the Bill
Advances in genetics have generated a variety of legal, ethical and social concerns. As a result, certain scholars have raised a concern that disclosure of genetic information could result in new forms of genetic discrimination (i.e. the perceived unfair treatment of individuals based on their genetic constitution).[1]
In particular, there is concern that information arising from genetic disclosure could be used in the context of employment decisions, and insurance. There is also a related concern that fear of genetic-related discrimination may lead individuals to decline to participate in genetic studies for fear of inadequate protection.
It is as a result of these issues that many jurisdictions throughout the world have legislated prohibitions against the use of genetic information for anything other than health reasons and research. It has been argued that Canada remains the only G7 country without a law specifically addressing genetic discrimination and that the current protections in place in Canadian law do not grant sufficient protection against genetic discrimination.
Discrimination in Canada is addressed primarily under federal and provincial human rights laws as well as the Canadian Charter of Rights and Freedoms. The principles and enforcement mechanisms are very similar in each jurisdiction.
Each law prohibits discrimination on specific grounds, such as race, sex, age, religion, and disability.
At present, it is unclear whether the definition of disability includes the risk of disease. Genetics involves probabilities; meaning that even though an individual may have a predisposition to a disease, they may not necessarily develop it.
Opposition
If it becomes law, Bill S-201 would prohibit insurers from requesting that previous genetic test results be made available to them for the purposes of classifying risk. This inclusion in the Bill has resulted in opposition by members of health insurance industry.
For example, the Canadian Life and Health Insurance Association opposes the Bill and urges "careful consideration of any changes that would ultimately increase the price of insurance for the majority of Canadians and negatively affect their ability to purchase protection from what may befall them in life."[2]
One of the arguments put forth by Insurers is that policy holders should disclose all material information relevant to assessing risk, because it could otherwise lead to unfair coverage. In particular, the industry argues, genetic information is no different than family history, cholesterol, hypertension, coronary heart disease, cancer, diabetes and other conditions, which have a genetic component. To not provide this information would essentially undermine the basis of insurance because both parties should have equal information at the time an insurance policy is purchased.[3]
If the Bill becomes law, it is possible that the insurance industry could bring forth a constitutional legal challenge as insurance is primarily regulated by the provinces (and the Bill is federal). In fact, provincial human rights codes include exceptions that may allow automobile, life, accident or sickness and disability insurance providers to make distinctions based on an applicant's age, sex, marital status, family status, or physical or mental disability.[4]
Interestingly, a previous version of Bill S-201 which had its first reading on October 17, 2013 included a provincial exemption for high-value insurance contracts.
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[1] Stuart G Nicholls, "Genetic discrimination legislation in Canada: Moving from rhetoric to real debate" CMAJ February 2016
[2] Canadian Life and Health Insurance Association Inc., « Yes, insurers need access to your genetic test results » (01/14/2016)
[3] Nicole Ireland, "Genetic discrimination law urgently needed, medical experts say. Sick Kids Hospital genetics head calls absence of confidentiality legislation paralyzing" CBC News (January 30, 2016).
[4] See, for example, Human Rights Code, RSO 1990, c H.19, ss. 22 and 25
